Systemic Lupus and Disability Evaluation

Development and validation of a disease-specific health-related quality of life measure, the LupusQol, for adults with systemic lupus erythematosus.
McElhone K, Abbott J, Shelmerdine J, Bruce IN, Ahmad Y, Gordon C, Peers K, Isenberg D, Ferenkeh-Koroma A, Griffiths B, Akil M, Maddison P, Teh LS.
Arthritis Rheum. 2007 Aug 15;57(6):972-9.
Royal Blackburn Hospital, Blackburn, UK.
OBJECTIVE: To develop and validate a disease-specific health-related quality of life (HRQOL) instrument for adults with systemic lupus erythematosus (SLE). METHODS: The work consisted of 6 stages. Stage 1 included item generation for questionnaire content from semistructured interviews with SLE patients. In stage 2 item selection for the draft questionnaire was performed by thematic analysis of the patient interview transcripts and expert panel agreement. In stage 3 the content validity of the draft questionnaire was assessed by patients completing the questionnaire and providing critical feedback. In stages 4 and 5 construct validity and internal reliability of the 3 versions of the LupusQoL were evaluated using principal component analysis with varimax rotation and Cronbach's alpha coefficients, respectively. In stage 6 discriminatory validity, concurrent validity, and test-retest reliability were evaluated. RESULTS: Stages 1, 2, and 3 resulted in a preliminary instrument containing 63 items. In stage 4, 8 domains were identified. This factor structure, accounting for 82% of the variance, was confirmed in stage 5. The domains and Cronbach's alpha coefficients were physical health (0.94), emotional health (0.94), body image (0.89), pain (0.92), planning (0.93), fatigue (0.88), intimate relationships (0.96), and burden to others (0.94). Discriminant validity was demonstrated for different levels of disease activity (British Isles Lupus Assessment Group Index) and damage (Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index). High correlations (r = 0.71-0.79) between comparable domains of the Short Form 36 and the LupusQoL assured acceptable concurrent validity. Good test-retest reliability (r = 0.72-0.93) was demonstrated. CONCLUSION: The LupusQoL is a validated SLE-specific HRQOL instrument with 34 items across 8 domains defined by patients as being important.

The relationships between disability level, health-promoting lifestyle, and quality of life in outpatients with systemic lupus erythematosus.
Huang HC, Chou CT, Lin KC, Chao YF.
J Nurs Res. 2007 Mar;15(1):21-32.
Cardinal Tien College of Nursing.
The purpose of this study was to explore the relationships between disability, health-promoting lifestyle and quality of life in SLE outpatients. Cross-sectional research design and purposive sampling were used in this study. One hundred and twenty-nine SLE outpatients from a medical center were sampled. Questionnaires, including the Visual Analogue Scale, Pittsburgh Sleep Quality Index, and The Hospital Anxiety and Depression Scale, were adopted in order to survey subject disabilities in terms of pain, fatigue, quality of sleep, anxiety, and depression. Health-promoting lifestyle was measured using the Health-Promoting Lifestyle Profile, while quality of life data were collected using Short-Form 36. Hierarchical regressions and a Sobel test were the major statistical procedures employed. Study results indicated that SLE patient self-reported pain and fatigue related to the SLE disease to be 27.7 +/- 26.2 and 37.4 +/- 26.6, respectively. Seventy-two percent of SLE patients were reported to be troubled by poor sleep quality, while 20%-32% suffered from severe anxiety and depression. The Health-Promoting Lifestyle Profile total score for SLE patients was 61.5 +/- 17.2. In terms of SLE patient quality of life (QOL), physical component summary (PCS) and mental component summary (MCS) scores were 45.3 +/- 9.1 and 43.8 +/- 9.7, respectively. Based on the hierarchical regressions and Sobel test, it was revealed that the health-promoting lifestyle has no significant effect on the physical component summary (p > .05). Fatigue was the mediator factor of health-promoting lifestyle to physical component summary of quality of life. Nevertheless, health-promoting lifestyle has a significant effect on the mental component summary (p <.05). Interestingly, the results showed facilitating health- promoting lifestyle in SLE patient could not enhance physical component summary of quality of life directly without an improvement in fatigue disability; however, facilitating health-promoting lifestyle had a direct and positive effect on the mental component summary of quality of life.

Work dynamics among persons with systemic lupus erythematosus.
Yelin E, Trupin L, Katz P, Criswell L, Yazdany J, Gillis J, Panopalis P.
Arthritis Rheum. 2007 Feb 15;57(1):56-63.
University of California, San Francisco, USA. ed.yelin@ucsf.edu
OBJECTIVE: To track changes in the proportion of persons ages 18-64 with systemic lupus erythematosus (SLE) who were employed from diagnosis through 2004, to estimate changes in annual work hours during this time, and to describe risk factors for work loss among those employed at diagnosis. METHODS: A structured telephone survey was administered to a cohort of 982 persons with SLE, which was assembled between 2002 and 2004. Of the 900 enrolled in 2002-2003, 832 (92%) were re-interviewed in 2004. We tabulated the proportion employed at diagnosis, at baseline interview, and at followup in 2004. Among individuals employed at each time frame, we estimated the hours of work per year. We then used the Kaplan-Meier method to estimate time until work loss among individuals employed at diagnosis and Cox proportional hazards regression to describe the risk factors for such work loss. RESULTS: Between diagnosis and followup interview, the proportion employed declined from 74% to 54%. Over the same period, hours of work per year declined by 32.2% among all individuals with a work history, but by only 1% among those continuously employed. Among individuals working at diagnosis, the proportion employed declined by 15% and 63% after 5 and 20 years, respectively. Demographics (age, sex, and education) and work characteristics (physical and psychological demands of jobs and level of control) were the principal determinants of work loss. CONCLUSION: Total cessation of employment, rather than reduced hours among employed persons, accounts for most of the decline in annual work hours among persons with SLE.

[Disability in lupus erythematosus]
Sander O, Wessel E, Richter J, Fischer-Betz R, Beer S, Winkler-Rohlfing B, Schneider M.
Versicherungsmedizin. 2006 Sep 1;58(3):120-5.
[Article in German]
Rheumazentrum Düsseldorf an der Universität.
Morbidity and co-morbidities in patients with lupus erythematosus (LE) result in an impairment, limiting activities of daily living. We compared the handicap, appraised by the German welfare system in patients with LE and their diagnosis, morbidities and co-morbidities, therapy, functional capacity, psychological status and general health. The data were obtained in an anonymous self-administered questionnaire conducted by the lupus patient association. 892 data sets were available for the trial. The mean age was 46.9y, disease duration was 10.3y. The patients had 3.8 concomitant diseases on average. 39.7% were still working and 35.4% drew a pension. 59.2% made an application for disability, which wasn't assigned in only 2.5% of cases. 82.6% had an average grade of disability of more than 50%. It demonstrated a good correlation to age, disease duration, type of LE and therapy. Predictors for a worse assessment were disease duration, osteoarthritis, cerebral insults and functional capacity. In conclusion the data demonstrate a fair appraisal of disability by the German welfare system in patients with LE. Self-administered questionaires can yield credible results.

Systemic lupus erythematosus in a multiethnic US cohort LUMINA (XLI): factors predictive of self-reported work disability.
Bertoli AM, Fernandez M, Alarcon GS, Vila LM, Reveille JD.
Ann Rheum Dis. 2007 Jan;66(1):12-7. Epub 2006 Jun 30.
Division of Clinical Immunology and Rheumatology, Department of Medicine, School of Medicine, University of Alabama at Birmingham, Birmingham, AL 35294-3408, USA.
OBJECTIVE: To examine the risk factors for self-reported work disability in patients from the LUpus in MInorities: NAture vs. Nurture cohort with systemic lupus erythematosus (SLE). METHODS: Patients with SLE of Hispanic (Texas and Puerto Rico), African American and Caucasian ethnicity were studied. Work disability was defined by patients' self-report. Only patients known to be employed at the baseline visit were included. The probabilities of self-reporting work disability over time were examined by the Kaplan-Meier method; differences between ethnic groups were examined by the log-rank test. The relationship of baseline socioeconomic-demographic, clinical, behavioural and psychological features with work disability was examined by standard statistical tests. Variables with p

Comparison of a self-report and performance-based test of disability in people with systemic lupus erythematosus.
Poole JL, Atanasoff G, Pelsor JC, Sibbitt WL Jr.
Disabil Rehabil. 2006 May 30;28(10):653-8.
Department of Pediatrics, University of New Mexico Occupational Therapy Graduate Program, Albuquerque, NM 87131-0001, USA. jpoole@salud.unm.edu
PURPOSE: The purpose of this study was to examine functional ability in people with SLE by comparing a self-report and a performance-based test. METHOD: Fifteen women with SLE and 15 healthy controls participated in this study. Participants completed a self report of daily living skills, the Health Assessment Questionnaire (HAQ). Actual performance during activities of daily living was evaluated with the Assessment of Motor and Process Skills (AMPS). Measures of cognition and disease activity were also collected. RESULTS: HAQ scores of the participants with SLE indicated only very mild disability while scores on the AMPS indicated ineffective skill performance and potential safety risks. In the participants with SLE, cognitive status correlated significantly with the processing component (r(s) = 0.62, p < 0.05) and disease severity correlated with the motor component of the AMPS (r(s) = 0.84, p < 0.001). The HAQ did not correlate with the AMPS. CONCLUSIONS: This study suggests that cognitive deficits were more related to scores on the performance-based test of functional ability rather than the self-report. The performance-based test appeared to provide information that was not gained through self-report and measures of disease activity and gross cognition.

Functional disability and health-related quality of life in South Africans with rheumatoid arthritis and systemic lupus erythematosus.
Benitha R, Tikly M.
Clin Rheumatol. 2007 Jan;26(1):24-9. Epub 2006 Mar 15.
Division of Rheumatology, Department of Medicine, Chris Hani Baragwanath Hospital, University of the Witwatersrand, Johannesburg, South Africa.
There is a paucity of data on the impact of chronic rheumatic diseases on functional disability and overall health-related quality of life (HRQOL) in Africans. MATERIALS AND METHODS: We compared Black South Africans (BSA) with rheumatoid arthritis (RA) (n=50) and systemic lupus erythematosus (SLE) (n=50) to geographically and ethnically matched controls cared for at a tertiary care facility. The modified health assessment questionnaire (mHAQ) and Medical Outcome Study short-form 36 (SF-36) scores and indices of disease activity and organ damage were collected from each group. RESULTS: Compared to the controls, both the RA and SLE groups fared significantly worse in respect of all the domains and summary scales of the SF-36. Compared to the SLE group, the RA group scored significantly worse with respect to the mHAQ disability index (mHAQ-DI), physical function and bodily pain (BP) SF-36 subscales, and SF-36 summary physical component score (SF-PCS). In the RA group, both the mHAQ-DI and SF-PCS correlated strongly (p<0.005) with the tender joint count, patient global assessment, 28-joint composite disease activity score, physician global assessment, and pain score. The SF-PCS showed only a weak inverse correlation with the swollen joint count (r=-0.29, p<0.05). In the SLE group, the systemic lupus erythematosus disease activity index correlated inversely best with the SF-36 general health subscale (r=-0.56, p<0.0001) and, to a lesser extent, with the mental health, BP, and vitality subscales, and SF-PCS and SF-mental component summary scores. CONCLUSION: Both RA and SLE have profound effects on HRQOL in BSA, with BP and physical disability particularly worse in RA patients. Disease activity, rather than organ damage or sociodemographic characteristics, correlates best with certain aspects of functional disability and HRQOL in both RA and SLE. Further longitudinal studies are needed to assess the clinical utility of measures of functional disability and HRQOL in this population.

Validity of the disease repercussion profile in patients with systemic lupus erythematosus.
Sharpe L, Denton F, Schrieber L.
Lupus. 2004;13(6):428-35.
Clinical Psychology Unit F12, School of Psychology, University of Sydney, NSW, Australia. louises@psych.usyd.edu.au
The Disease Repercussion Profile (DRP) was developed for use with patients with rheumatoid arthritis (RA) and has been shown to be a valid and clinically useful assessment of patient-perceived handicap. This study aimed to determine whether the Disease Repercussion Profile was also suitable for use with patients with systemic lupus erythematosus (SLE). Sixty patients with a definite diagnosis of SLE from a consultant rheumatologist were recruited into the study. They completed a series of questionnaires that assessed quality of life, depression, anxiety, attitudes towards the illness and the DRP. Results showed that patients with SLE endorsed each of the six spheres of the DRP as being frequently affected by their illness. Activity was most often endorsed. Both relationships and social activity were equally frequently adversely affected, and more often affected than the remaining spheres of finance, emotions and appearance. However, as in RA, when any area of function was affected, it was rated as very important to the individual. Indicators of quality of life were reliably related to all areas of function, as was depression and attitudes towards illness. The present study indicates that the DRP does have relevance for patients with SLE. Strong correlations between quality of life indicators, depression, attitudes towards illness and DRP subscales and total score indicate that this measure is a valid tool to assess the effect of illness on individuals with SLE.

An assessment of the Health Assessment Questionnaire functional ability index among women with systemic lupus erythematosus.
Milligan SE, Hom DL, Ballou SP, Persse LJ, Svilar GM, Coulton CJ.
J Rheumatol. 1993 Jun;20(6):972-6.
Mandel School of Applied Social Sciences, Case Western Reserve University, Cleveland, OH.
The validity of the Health Assessment Questionnaire (HAQ) functional ability instrument was tested in 120 women with definite systemic lupus erythematosus (SLE) from rheumatology clinics at 2 local tertiary care institutions. Reliability and validity results for this population of women (mean age: 41 years +/- 13; age at diagnosis 33 years +/- 13) indicate that (1) the HAQ was internally reliable (standardized alpha = 0.9443) with no interitem correlation exceeding (r = 0.75); (2) confirmatory factor analysis identified 2 predominant factors among the HAQ components suggestive of large limb gross movements (e.g., walking, arising) and small limb fine movements (e.g., the ability to eat and firmly grip objects). Cumulatively, the 2 factors accounted for 64% of the variation in HAQ ability response. The HAQ response was also valid when compared to the overall disability index (r = 0.65 to 0.82) and other common disease variables that were reported by the patient and collected by the physician at the time of clinical examination. In addition, when stratified by active and inactive disease as defined by the Lupus Activity Criteria Count, inactive patients reported lower disability components (dress, arise, eat, walk, hygiene, reach, grip and activity) than active patients. These findings confirm the valid use of the HAQ as a measure of disability, when compared with other clinical measures of disease status and activity, in female patients with SLE.

[Dynamics of the work capacity of patients with variants of systemic lupus erythematosus, determined by the Expert Commission on Occupational Medicine]
Tarasov AN, Chirkina SS, Shishkin VI, Prudnikov AM, Afanas'eva IK.
Ter Arkh. 1985;57(8):85-8.
[Article in Russian]

[Work capacity of patients with systemic lupus erythematosus]
Tarasov AN, Afanas'eva IK, Chirkina SS.
Vrach Delo. 1985 Jan;(1):81-5.
[Article in Russian]

[Work capacity assessment of systemic lupus erythematosus patients during the initial examination at the Medical Commission for Determination of Disability]
Tarasov AN, Chirkina SS, Afanas'eva IK, Dolgodvorova KF, Prudnikov AM.
Ter Arkh. 1984;56(5):36-9.
[Article in Russian]

[Evaluation of work capacity of patients with systemic lupus erythematosus and systemic scleroderma]
Timeskov IS, Chirkina SS, Dolgobvorova KF, Gil'fanov RN, Zhuravleva SI.
Ter Arkh. 1979;51(1):68-71.
[Article in Russian]

[Assessment of the state of the cardiovascular system in the disability evaluation of patients with systemic lupus erythematosus and scleroderma]
Zhabina TN, Morozova RZ, Otkalenko IuK.
Vrach Delo. 1977 Nov;(11):72-5.
[Article in Russian]

[SILICOSIS. DIAGNOSIS AND INVALIDITY EVALUATION.]
LINDGREN SA.
Sven Lakartidn. 1964 Jul 1;61:2094-107.
[Article in Swedish]